Scientist Claims on Video That First Gene-Edited Babies Were Born in China

"Society will decide what to do next."

Chinese scientist He Jiankui, Ph.D., has claimed that he is responsible for the world’s first “gene-edited babies” in an interview with the Associated Press. His statement represents a pivotal moment that geneticists thought would happen in a far-distant future. If it’s true, that future arrived abruptly on Sunday night, shocking scientists around the world.

He, who runs a genetics lab at the Southern University of Science and Technology in China, is claiming to have created genetic modifications to the genomes of two twin girls, Nana and Lulu, who were born in China several weeks ago. The groundbreaking step here is that the “edit” he claims to have made occurred in reproductive cells — the germline — meaning that the changes will be passed on to future generations if Nana and Lulu have their own children. In essence, this family’s genetic material will always have He’s fingerprints on it, something that Nana and Lulu — not to mention their descendants — never consented to.

“I feel a strong responsibility that it’s not just to make a first, but also make it an example,” He told the AP. “Society will decide what to do next.”

Why This Is a Huge Deal

Since the invention and widespread acceptance of CRISPR — the powerful and easy-to-use gene editing technique that enabled He’s experiment — scientists have had the resources to perform germline edits, but there are big reasons why we tread carefully around this area of research. One concern is that the ability to workshop human genetic traits might lead to the development of “designer babies,” allowing parents to hand-select traits in their children from eye color to, potentially, IQ score. This is a legitimate fear that most reports released on gene editing consider very carefully.

He Jiankui, explaining his work to the Associated Press

For instance, a 2016 law in the United States forbids the FDA from using federal funds to review “research in which a human embryo is intentionally created or modified to include a heritable genetic modification.” It’s not an outright ban, but the law makes it nearly impossible to edit an embryo with the intent of allowing that embryo to one day grow into a human.

In the UK, where germline editing is strictly banned in human reproduction, the Nuffield Council on Bioethics released a report in July that argued for a broad and inclusive societal debate about germline editing and its social consequences. But this report also warned that individual choices will be increasingly important to this debate. It concluded that “aggregate individual choices could lead to a change in social norms connected with a change in the composition of the human population.”

As the Nuffield Council on Bioethics was writing this report, He was conducting his research in China, making the “individual choice” to manipulate the genetics of an embryo and allow that embryo to develop without the input of the wider scientific community.

However, He argues that his work does somewhat align with one of the goals of continued research on germline editing — its capacity to prevent heritable diseases like cystic fibrosis. This is largely the takeaway from a 2017 report from the National Academy of Sciences, which recommended that we “permit clinical research trials only for compelling purposes of treating or preventing serious disease” but avoid germline editing for “enhancement purposes.”

In the video, He makes the case that he fits into the “disease prevention” niche. He altered a single gene that creates a transporter that allows HIV viruses to enter a cell. One twin has two copies of this gene and should, theoretically be resistant to the virus. The other only has one, so that in itself presents an ethical quagmire.

“Society will decide what to do next.”

But even more importantly, his research wasn’t on an individual with a genetic predisposition towards disease, it was on two otherwise healthy embryos. Additionally, HIV isn’t a genetic condition, and it is preventable without “gene surgery,” as He calls it. These facts combined have led some bioethicists to call this experiment “monstrous.”

He is clearly aware of the implications of his actions and has even condemned similar ones in the past. In a blog post in 2017, written only days after the National Academy of Sciences report, He outlined five problems that needed to be addressed before considering human germline editing. He concluded the following:

“the human behavior of any person who performs germ cell editing or gene editing is extremely irresponsible, both in terms of science and social ethics, without addressing these important security issues.”

Still, he went right ahead and did it anyway.

The Shady Stuff We Still Don’t Know

China doesn’t have strict regulations outlawing germline modification — one study classified China’s laws as “ambiguous,” so He’s work isn’t illegal. But the lack of transparency around this case, given its implications, is alarming.

His methods haven’t been published in a journal, which would open his methods and results up to inspection by other experts. The AP report also adds that his work didn’t appear in the Chinese registry of clinical trials until November 8th — seeing as the twins have already been born, this implies that he began this work months ago.

Southern University of Science and Technology says it gave no permission to He Jiankui for his claimed gene editing experiment and has suspended him without pay. https://t.co/gv0nK9V3UQ

Additionally, He’s university wasn’t even fully informed of his actions. The University issued a statement indicating that they were informed of He’s activities through media coverage and were “deeply shocked” by the event. Though Shenzhen Harmonicare Women’s and Children’s Hospital did grant him permission and provided embryos for his work.

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As far as the veracity of these claims, George Church, Ph.D., a professor of genetics at Harvard Medical School, toldSTAT he had contacted the team in China and believes the claims are “probably accurate.”

So Why Now?

Despite the risks, this is a pretty convenient time for someone looking to make a splash in the genetics community. This news dropped on the eve of the Second International Summit on Human Gene Editing, which will begin this week in Hong Kong. And the announcement hasn’t gone unnoticed by Peter Mills, assistant director of the Nuffield Council on Bioethics:

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“Coming on the eve of the second international summit on genome editing, this announcement looks like a cynical attempt to seize headlines,” Mills said. “If the claims are true, it is a premature, inexplicable and possibly reckless intervention that may threaten the responsible development of future applications of genome editing.”

If the goal was to make a splash, He has succeeded, but He probably won’t be lauded as a hero in Hong Kong, where he is slated to speak Wednesday. Still, in the above video, He appears unfazed, ready to bear the consequences of his actions whatever they may be.

Update 2:40 p.m. Eastern: Rice University announced that it’s investigating Michael Deem, Ph.D., a professor of bioengineering, for his supposed involvement in He’s work. Rice provided Inverse with the following statement:**

Recent press reports describe a case of genomic editing of human embryos in China. These reports include a description of involvement by Dr. Michael Deem, a professor of bioengineering at Rice University. This research raises troubling scientific, legal and ethical questions. Rice offers the following statement:

Rice had no knowledge of this work.

To Rice’s knowledge, none of the clinical work was performed in the United States.

Regardless of where it was conducted, this work as described in press reports, violates scientific conduct guidelines and is inconsistent with ethical norms of the scientific community and Rice University.

We have begun a full investigation of Dr. Deem’s involvement in this research.

We have begun a full investigation of Dr. Deem’s involvement in this research.

Update 3:07pm Eastern: This article has been updated to include a statement from the Southern University of Science and Technology in China.